Two years ago, Rita Kimak of Syracuse was a healthy and active young woman. She and her husband Andy both held fulfilling jobs. They had just joined St. Joseph's Church in Camillus, where Rita still volunteers as coordinator for the third grade religious education program.
Then, Rita started to experience troubling physical symptoms. She developed severe headaches, and chronic pain in her back, arms and legs. Medications did little to alleviate the pain, which was becoming stronger and almost unbearable. The cause of her symptoms remained unidentified for months.
Rita was diagnosed with both Ehlers-Danlos syndrome, a genetic disorder affecting the body's connective tissue, and syringomyelia, a progressive disorder of the spinal cord. Syringomyelia develops when cerebrospinal fluid enters the spinal cord, forming and filling a cavity called a syrinx. As fluid continues to collect, the nerve fibers in the spinal cord are damaged, resulting in muscle weakness, joint stiffness, decreased mobility and even paralysis. Chronic back pain is common, as is the inability to feel pain and temperature in the arms and hands. While neither condition is curable, syringomyelia can sometimes be treated surgically.
Rita has suffered from many of these symptoms for the past year or so. She hopes to escape the more frightening and debilitating ones, but is not yet considered a safe candidate for surgery. Her ongoing treatment by Dr. E. Fran ois Aldrich, a neurosurgeon at the University of Maryland Medical Center in Baltimore, offers some hope, but no guarantees. Rita will continue to be monitored by physicians at Strong Memorial Hospital in Rochester. If the syrinx grows larger, Dr. Aldrich will operate in an attempt to give Rita some relief.
Thanks to an understanding employer, Rita is still able to work. Her husband, however, lost his job in December. Although this has freed Andy to accompany Rita to her medical appointments and provide her with the increasing care she requires at home, the strain on the family's finances is nearing the breaking point. Andy has since found new employment, but the family needs help meeting their medical and travel expenses.